6 month MRI

She’s a pro at this now and doesn’t even flinch when they start her IV. 

Her MRI and bloodwork were this morning followed by an appointment with the oncologist.  All her bloodwork looks wonderful (white blood cell count was great) and kidney function is perfect too (checking because of the meds she’s on.) However her MRI showed no significant change in the tumor.  Not what we were hoping for but also not bad news either.  

We are so grateful that she’s feeling well and we’ll continue to trust God and His plan. 

6 months

 6 months feels like a lifetime ago but also feels like yesterday.  It really is crazy how quickly your life can change in a blink of an eye.

I had a conversation with Hope the other day.  Anyone that knows her knows that she is my worrier.  Well, she told me...

"Mom, I was never worried when I was in the hospital.  I felt so calm because I felt Jesus right there with me."

So thankful that we serve such a mighty God because I too felt Him with us and it was all the reassurance I needed.  I even text one of my friends the morning of her surgery to tell her that I could literally feel Jesus right there next to us.  It was the best feeling in the world.

Please keep the prayers coming.  MRI is Wednesday and we want more good news!

Summertime

Kids are officially done with the school year. Johnboy finished up his sophomore year and Hopie girl is finally out of elementary school. 

Both kids are doing great. Hope had another EKG and ECHO last week and all looks good. We also had an appointment with Dr. Shafron and he is VERY pleased with how well she’s doing. Next MRI is on the 22nd and we’re praying for more good news. 

 

 

5 Months

Today marks 5 months and life is great!!!!

We just got home from Hope’s last tournament of the season up in Flagstaff. Her team played AMAZING. Made it to the semifinals but came home this afternoon after a tough loss. So proud of my girl and her teammates though. 

The best part of the weekend….my niece played in the same tournament so we got to spend the weekend with my brother and sis n law. 

Hope is still going strong on her meds. She’s losing a lot of her hair (another not so fun side effect) but we know this is temporary. Next MRI is in June.🙏🏼

Four more days and it’s summer break. We cannot wait. 

 

Doing Great

Not much to report. Both kids are doing great and life is pretty much back to normal for now. 

Hope is still taking the medicine to shrink her tumor (we are almost a quarter of the way through treatment!) She is manging the half dose much better. Her body is still covered in bumps/rashes/pimples but it’s not as itchy or painful at this dose.

We just got back from her school field trip to the Grand Canyon and it was a blast. These besties made memories to last a lifetime. 

Next up, soccer tryouts and summer break for Hope while John is counting down the days to see, Top Gun 2. He too is VERY excited to be done with school (prison as he calls it) and looks forward to summertime and Birch Bay!!!!

Counting our blessings daily and praising Jesus for this wonderful life He has given us. 

 

4 Months

Four months ago today my sweet girl endured a ten hour brain surgery. I still cannot believe all she’s gone through but we know that know matter what we face, God is BIGGER and we will never lose sight of that. 

She’s doing amazing.  Hair is growing back nicely and she feels great. And…she hasn’t had a headache since Dec 18th🙌🏼🙌🏼🙌🏼

 

He is Risen

We had a wonderful Easter!

Enjoyed a pre-resurrection Easter Eve service😉. Slept in on Sunday, ate too much chocolate for breakfast, cooked a HUGE turkey (that was supposed to be cooked on Christmas) and enjoyed time with family and friends. 

Hope decided to forgo her headband that she’s been wearing (to cover her shaved head and scar) and we couldn’t be more proud of her. She looked beautiful and if you didn’t know what she’s been through you wouldn’t even notice. 

Both kids are doing great. We’re all ready for summer break and lazy mornings. 

 

She’s back!

We had a great weekend in Prescott at Hope’s first tournament since December. She looked great, had some good saves and even scored her first goal this season. 

Her team is amazing (girls and parents.). They were all so happy to have her back. She got lots of welcome back gifts and a big tub of ice cream for scoring a goal. She kept saying, “This is so much fun.”

We (especially Hope) enjoyed a nice long break from her medicine but we restarted again this morning and praying all goes well. 

Next MRI is scheduled for June 21st!

 

Feeling Good

Hope’s appointments this week went really well. Her oncologist is VERY pleased with how well her body is responding to the medicine. She said some people just respond quicker. Hope can continue taking a break off of the medicine for another week. She is very excited to leave all her meds behind when we head north for a tournament next weekend. We will restart a week from Monday and she’s able to half her dose at that time🙏🏼

Hope’s spirits are high and she’s feeling happy. Even though we have a long way to go with treatment, we see the light at the end of the tunnel. 

 Today was her first game back and Wrestlemania (the Super Bowl of wrestling.) We all enjoyed the four layer cake Hope made and now we’re settling in for a long night of WWE wrestling. 

I have two happy kids tonight and I am feeling so blessed for this life I’ve been given.  

 

All is Well

As they say, no news is good news!

Hope is doing great. Got straight A’s again this quarter (even with missing numerous weeks of school,) spent this past weekend with her bestie/cousin, Paige and is getting back in the swing of things with soccer practice every night. 

We’re excited and nervous (well, I’m the only one who’s nervous) for her first game back this Saturday. She hasn’t played in a game since the first week of December when she broke her nose. 

She is still taking a break from her medicine but we will discuss restarting it at her oncology appointment this Friday. It’s been nice giving her body a break this past week. Her poor skin is covered in rashes. 

As always, putting all our trust in the Lord. We are so so thankful for all the blessings He’s given us. 

 

MRI looks GREAT

This girl is nothing short of amazing. She had her first MRI (since starting her treatment) with and without contrast. She didn’t even flinch when they started her IV or while laying in the MRI for 45 minutes. While waiting to go back, she saw one of her teammates getting an MRI too.  What are the odds that both girls would be getting MRI's at PCH on the same day and in the same room (back to back.)  

We’ve been praying to see changes in the size and shape of her tumor. I told Hope that I was praying for a miracle and the tumor would be gone. She reminded me…"Mom, God’s already given us a miracle, I am alive."  She's the best and always reminds us of God's faithfulness.

Her oncologist emailed us late last night with the results…..and it looks GREAT!!!  The tumor is significantly smaller🙏🏼

We stopped the medicine again because the rash is pretty severe on her neck and back. Thankfully we can give her body a little break again and discuss dosage at her next appointment on April 1st.

We are praising Jesus over and over again!!!

 

Homecoming

I can’t let this day pass without giving a shout out to my favorite boy!!!  March 20th is one of my favorite days of the year.  On this day (16 years ago) we were finally able to bring our baby boy home from the hospital…110 days after his birth.  What a glorious day it was.

Three Months Today

Three months ago today I wasn’t sure if my baby girl was going to wake up here on earth or wake up in Heaven. I don’t know what it’s like to lose a child but I’ve come close (two times) and the pain is like nothing I have ever felt before. 

So so thankful for a loving God. No matter what we face He has never left our side.  

 

Weened!!!!

And this girl is officially weened off her seizure meds. No more Keppra!!!!!!

Enjoying some family time up north away from all the doctor appointments but getting anxious for her MRI on Monday. 

As always…we’ve got this!  We have HOPE!

 

12 Weeks

This girl amazes us daily.  I know I have said it before but she is seriously all the good things in this world wrapped up in one.  I wish more of us had an attitude like her....she's so positive.  Definitely takes after her Grams.

Let's see...

*She will be completely weened off her Keppra this Thursday!!!!  She's been on it due to the seizures she had in the emergency room and because of all the manipulation in her brain during both surgeries.

*She has now been on Trametinib (tumor shrinking med) for 26 consecutive days. While this medicine is no joke, she's trying her hardest to power through.  The rash is intense and quite painful but between the weekly red/blue light therapy and a topical steroid cream her oncologist just called in, we are hoping to get a little more relief.  These side-effects are tough for anyone but especially hard for a 12 year old girl.  We are 1/8 of our way through treatment.

*We are excited and anxious for her MRI next Monday.  Praying to see change in the tumor size but also being realistic as we know it takes 8 months for the medicine to start doing its job.

We are forever grateful for God's mercies and so blessed to have an army of prayer warriors lifting our girl up in prayer.  Always relying on God's strength (Isaiah 41:10)

We've got this.  We have HOPE!

 

More tests

Today we spent the morning at PCH getting her peripheral vision checked. The testing was a piece of cake. She passed with flying colors and we’re grateful to check this off  our list….for the next 6 months at least.  

Her vision is a concern because of the size and location of the tumor….but so far so good🙏🏼  Another answered prayer. 

On another note, today is day 13 of the restart of her medicine. Last time it was on day nine when the horrendous side effects started. We’re thankful for our dermatologist who prescribed oral and topical steroids and great neighbors/friends who own a medspa and have been doing facials and red/blue light therapy weekly. Praying we can keep the rash under control and the next two years will be smooth sailing. 

 

Two Months

Today is Tuesday, 2/22/22 and it’s Hope’s two month post op!  I love it. 

She restarted her medicine, Trametinib last Thursday. Praying we can manage the side effects and her body will adjust quickly…more importantly praying the drug does it’s job and shrinks the tumor🙏🏼

Our first MRI post PICU stay is March 21st at 1:00pm. While we know the medicine takes about 8 months to kick in, we also know we serve a God that makes the impossible, possible and we hope and pray to see some changes in the tumor.  

Best Friends

Find yourself some friends that will laugh with you, cry with you, pray for you and lift you up when you are down.  Beyond thankful that Hope has these girls as her best friends.  They are such a gift to each other and I am so grateful that she has them by her side during this journey.

As mentioned, Hope is in and out of school and every single school day she misses, she gets texts from these girls checking on her and letting her know they are praying for her.  They don't come any better than this.

And to top it off, they all waited to have their bestie Christmas exchange until Hope was home and well.

God is so good!

 

It’s Been Rough

I am not going to lie, this part of the journey is rough. The side effects from her medicine came on fast. Her poor little body is covered in sores/rashes/blisters/pimples…a mixture of all of those and they itch and are painful. 

Her oncologist had us stop her medicine (Trametinib) last Thursday the 3rd to give her body a break. She’s now on a strong antibiotic 2x per day, Keppra (for seizures) 2x per day and lots and lots of vitamins to keep her body healthy. 

She stayed home from school for a week, did her work online and took lots of naps. She’s also on Benadryl around the clock to help with the discomfort..but it makes her very sleepy. 

Thankfully she started feeling more like herself again yesterday so she went back to school and by this morning she was feeling great.

We will restart the medicine this Tuesday and pray that the antibiotics we now have on board will help with the side effects.  

Continuing to praise Jesus through this storm. We know He’s not done writing her story. We will get through this….just a bump in the road.  

 

6 Weeks Post-op

She’s come a long way in the past six weeks🙏🏼

She’s feeling well, back to school full time and doing pilates videos every night. Her determination is inspiring. 

However the side effects of her medicine came on quickly and they’re quit uncomfortable for her. She has a severe rash (acne) all over her face, neck, check and back. It’s painful and itchy. Thankfully our dermatologist squeezed us in this Friday. Praying he can bring her some relief. Our Oncologist said if we can’t get it under control we may have to half her dose or take a few days off of it and see if that helps. It’s going to be a long two years but we know the alternative it’s 100% worse.

The Birtch’s were made to do hard things. We’ve got this!

 

Day Full of Appointments

 Both kids happily played hooky from school today so we could go to a few doctor appointments.  

First up was Hope’s appointment with the ophthalmologist. With the size and location of her tumor we have to monitor her vision. I am happy to report she can see perfectly with 20/20 vision and there is no pressure behind her eyes. Next appointment is in four weeks and they will check her peripheral vision. 

She came home and napped while Johnboy went to his orthodontic appointment. 

Today was a good day!